I am sad to say, that I've noticed a drastic difference in my oldest sons cognitive abilities since his last epileptic seizure.

Ever since his last seizure, he hasn't been able to communicate fluently, his answers are a sluggish and delayed yeah or no, it's like talking to a brick wall!! I am so so sad! He's been like this for about a month now! He is still able to talk when he wants to, but he isn't able to relate to someone who is talking to him asking him questions, or stuff like that. I fear he may have severe brain damage from his last seizure, to which my husband said only lasted 2 minutes!!! Maybe he had one in his sleep during the night that we don't know about? My heart is broken, I'm wondering if he can relearn how to communicate better, like he used to... He's just not the same, and I am very sad, I feel like I'm the only one noticing this, I've asked my husband and his siblings they say no, but it's very apparent to me!

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HijabaDabbaDoo · F

That's horrible. I have epilepsy and have trouble communicating after or making much sense but it's never lasted for more than 2 days following a seizure. A month is awful.
It might be worth mentioning it to his neurologist?

saintsong · 41-45, F

@HijabaDabbaDoo I'm so sorry you have that too, my heart goes out to you both.... But yeah I've noticed that too, it usually only being at it's worse after a day or two, never being this long! I think your right in getting him in to see a neurologist!

HijabaDabbaDoo · F

@saintsong I hope they can offer help. Does he have a regular nurse to contact? I'm not sure how it works there but here I have check ups every 6 months but have my epilepsy nurses number if I want to ask her anything.
Also if he's prone to having seizures in his sleep, if you haven't already I'd get anti suffocation pillows

saintsong · 41-45, F

@HijabaDabbaDoo Where do you live? I have my own nurse for my own illness of schizophrenia, through mental health, but my son doesn't have his own nurse for epilepsy which I would love for him to have for himself!! I have never heard of anti suffocation pillows can you buy them on Amazon?? This is the bestest advice anyone has ever given me out of the 11 years he's had this illness!!! Thank you kindly!!!

HijabaDabbaDoo · F

@saintsong You're welcome. I hope he manages to get the help he needs!
I'm from the UK. Yeah you can buy them on Amazon. It might be worth asking what resources are available for him too because I wasn't told until much later. As frustrating as it is, you've gotta advocate for your health because doctors can get tunnel visioned

saintsong · 41-45, F

@HijabaDabbaDoo We tried when he was a minor, I took him a couple of times to the big city to do a couple of stay awake all night EEG's and CT and MRI, on and off again then on meds! He is 26 years old now, he was off of meds for a couple of years, and then went back on them last Spring! He hated going to the doctors because he didn't like the wait times! Or needles! So he refused for the longest time medical treatment! I tried, and tried! But his dad took him in last Spring and forced him to get back on his meds... But I have noticed a difference in him none the less over the last month, asking if he had a seizure that day, or the day before and everybodys answer was no, and every time I called him while he was in Ontario visiting his Grandpa I tried communicating with my son, and he couldn't pay attention to anything I was saying each time I've called him??? I'd ask did he have a seizure today and the answer would still be no! So I don't know what is happening to him?

HijabaDabbaDoo · F

@saintsong what kinda seizures does he have?

saintsong · 41-45, F

@HijabaDabbaDoo Clonic Tonic seizures, he stops breathing foaming at the mouth turns blueish grey, his whole body goes stiff and shaky... It's scary to see! He's put holes into the walls with his head, he's fallen off of lifts, he's fallen in dangerous places, he's been left behind by teachers while finishing up playing soccer outside, he's been accused of doing drugs! It's just sad! What kind do you have?

HijabaDabbaDoo · F

@saintsong The level of ignorance is disappointing but not entirely surprising. The negligence is awful. I'm sorry to hear that. I can imagine how scary it is to witness that. I have focal onset seizures, they fluctuate. It's weird because the kinda seizures I had as a kid are nothing like the seizures I have as an adult.

saintsong · 41-45, F

@HijabaDabbaDoo Did your seizures get better or worse? I once saw a woman say that her daughter outgrew he seizures, it brought me hope! He was 15 when he had his first seizure, and his identical twin has only had the 1 seizure after being attacked by a bully having his head smashed into the concrete repeatedly two nights later at night he had his one and only seizure I called 911 my husband went with him to the hospital, I stayed with the rest of the kids, but when he came home he couldn't put a sentence together either.... Every year he went to see a neurologist then his identical twin had his first seizure at that same bully's house years later!!!!!! This time it happened because they were born with it said the neurologist... But it didn't appear until they hit puberty. One twin had the one grand mal seizure, and the other twin has Epilepsy with Grand Mals even though they don't call it that anymore.